Pain and Politics

Lost in perhaps the most interesting presidential campaign in my fifty-seven years is the fact there were a lot of other local, state, and federal elections going on at the same time, all with the potential to shape our lives for the better or worse. In fact, there are about 520,000 elected positions in the United States. That leaves a lot of room for citizens to participate in the political process either to serve as an elected official or to advise those who are. On an almost daily basis, I hear individuals complain about those who do serve. Too often, those who complain have no interest in serving, sharing their views directly, or even voting. As one of my friends once said, if you aren’t going to get involved, don’t complain about those who do. If you choose to serve, you have my admiration, no matter what your beliefs. That is not what I want to talk about. Rather, I want to talk about why the rest of us need to share our beliefs with those elected and how to go about doing it. For those in pain and those who serve them, there is no more important time that the present. Public policies designed to address the “opioid abuse crisis” are sweeping the nation, too often harming those in pain. There are many other policy issues with the potential to help or harm those who suffer, and these need to be addressed as well.

Why?

To explain why, I want to share one of my personal lobbying experiences. About six or seven years ago, I was asked to go to Washington, DC as a contingent of pain professionals tasked to lobby our congressional representatives about the merits of the National Pain Care Policy Act (PCPA) of 2009, which had been passed as a part of the Affordable Care Act (ACA). This was my second lobbying experience in Washington, each time representing my state of New Hampshire. Contrary to popular belief, most lobbyists are actually unpaid individuals who really care about the issues they represent and wish to share their perspectives about them. Our mission was a bit unique. The PCPA had already been passed, but not appropriated. Unlike the broad ACA, the PCPA actually enjoyed bi-partisan support, and had for most of its twelve-year existence. It called for:

Creation of an Institute of Medicine conference to look at the provision of pain care in the United States. The findings of the conference which resulted were released in a document entitled “Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research,” in 2011 and resulted in the National Pain Strategy (NPS), published in 2016.

Improve education in pain management for health care professionals

Improve pain research agenda for the NIH.

Our job was to educate our congressman about the merits of the bill and to make sure it did not die in appropriations. A colleague and I met with the health care representatives for each of our state’s congressman. Our visit to Washington was akin to a journey to Oz, where we quickly found out that not only were our wizards not all powerful, they were somewhat ignorant. The individuals we met with knew very little about the ACA. They knew nothing about the PCPA. To their credit, they wanted to learn, and they asked a lot of questions. We could answer their questions about the PCPA. We struggled with the questions about the ACA.

I would call this a learning experience. I left Washington with a new understanding of politics. We elect our politicians to do a job, one that is complex as each issue they address has multiple and sometimes contradictory perspectives. It would be nice to think of each politician as an expert on every issue they vote on. The reality is that is not true. They need to be educated. In making policy, they seek to find a balance, and can optimally do so only if they hear from those who represent those various perspectives. Those who do not share their perspective represent a political blind spot which will be missed in the final decision making process. In the world of chronic pain, too often the patient’s perspective is the one left out. That is something the NPS seeks to remedy thanks to the action of an increasingly united group of consumer advocacy groups. It is my responsibility as a citizen to share my strong beliefs with those who serve. I also came to understand that in any legislative body, there are those who have more expertise on a specific issue, and the members of the body, as a whole, place great faith in the opinions of those experts for good or bad. As my elected officials were not viewed as experts on the ACA or the PCPA, it was not surprising they knew little about either issue. What concerned me was how willingly they blindly followed the leader in making their votes. Still, this reality creates an opportunity; for advocacy to be effective, those leaders viewed as experts on a relevant issue need to be identified and targeted.

With the election of 2016 in the rear-view mirror, a number of political issues are of importance to those with chronic pain:

What will happen to the directives of the PCPA and the NPS?

What will happen to the medical marijuana laws created now by 29 states and the District of Columbia?

How will public policies directed at the opioid abuse crisis affect those who suffer with chronic pain?

How will proposed changes to the ACA affect those who suffer from pain?

How?

I am hardly an expert on effective lobbying, but in my experiences at all levels of government, I have come to understand some basic rules.

A voice only has value if heard. It is both your right and your responsibility to share your strong beliefs with your legislators. While meeting with legislators can be nerve-wracking, it is very important, and sometimes the smallest of voices can change everything for the better, but it will only do so if it is heard.

While letters are helpful, face to face communication is much more valuable.

Make your pitch personal. When we met with our legislators, we asked them to think of someone in their lives who suffered from pain and how it affected him and those around him. Legislators have a tendency to think of the “macro” picture when making decisions. It is critical that you make them understand the “micro” one; how their decisions affect the individual.

Be knowledgeable about your topic. If you are, you will be listened to, and, more importantly, you may come to be sought as source of information.

Be as objective as possible. Aristotle is attributed with saying that “law is reason free from passion.” Passion drives you to the legislator’s office, but objectivity convinces him that your cause is worthy.

At the same time, be passionate about your cause. That will make your presentation memorable.

Be concise. Legislators are very busy are more likely to listen to a short, and to the point presentation.

Be available. As you are leaving, give the legislator your contact information and promise to be available if needed.

Don’t be disappointed if you talk to an aid. The legislator’s policy agenda is shaped by the experts they rely on, so that person is very important to you, probably more so than the legislator.

Safety in numbers is important. Your presentation means more if you are either representing a larger group or are part of one. Make sure you share your group’s information with the legislator. Be careful not to “stray off the reservation.” While your personal beliefs have merit, if you are representing an organization, make sure it is that collective view you share.

Identify the key legislators who oversee the issue you are bringing and target that individual with your presentation. Your time is valuable, and targeting individuals with little influence wastes it.

Have patience. You won’t always be successful in getting what you want, but sometimes you will. Your efforts will always sway the argument, whether you know it or not.

* * *

I have been practicing pain management for the past 28 years, and have been involved in advocacy and policy development for a good part of that time. While my advocacy role has been peripheral for the most part, I have been able to make a difference. Recently, I wrote a letter to my Governor and my Senator about the harm public policy initiatives targeted at reducing opioid abuse are doing to those who suffer from pain of all sorts. While I was ignored by my Governor, I received a beautiful thank you from my Senator “for all the work I do on this issue.” It is exciting to see advocates of those who suffer from pain come together to create a louder and louder voice, one that is making significant change, one I encourage you to become a part of. The challenges have never been greater.

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Thank you Dr. Nagel for all you do. Do you have a valid email address for Dr. Novotny as he seems to be THE person to contact with complaints and suggestions from the chronic pain community. Maybe if we could get away from “the poor me ” mentality and each of us take 15 minutes to write him a letter, perhaps 5,10 or even 20,000 emails might just get his attention. Thank you!

If only…if only I could do my laundry, or even drive myself to doctor appointments and to pick up my medications. If only I had energy to spare to advocate at a national or state level. If only I have the stamina to follow through with my thoughts…whether it’s about doing something I enjoy like baking or even taking a shower…let alone having a face to face meetings with those in government! If only people in pain could do all we need to do to fight this…instead of just bits and pieces and wasted efforts from all the fractured organizations who somehow don’t seem to want to join together for the greater good of numbers and the huge amount of work no one advocacy group could do alone!! If only…life was fair and pain didn’t rule our days and nights and all the unbetween! If only we could DO MORE!! If only….

Dr. Nagel: Thank you for trying to educate and lobby members of Congress on chronic pain. I am not surprised that they are completely uneducated on the subject. Please keep trying. There is a strong CAMPAIGN for CRPS started by Amanda Korbe, #PatientsnotAddicts. She can be reached on Facebook. Many of us in CRPS groups (not to whine, but to support and advise) signed and sent letters to our legislators. If you know about the story of “spoonies,” most of us also sent spoons tied with orange ribbons with a letter explaining what the symbol of spoons means to a chronic patient and how important narcotic pain medication is to them, on November 7th, CRPS Day. Some were able to get large bridges, skyscrapers and even State Capitols lit up in orange lights that day to bring about more awareness to CRPS. Thise letters that accompanied the spoons also described in depth what CRPS is. We continue to write letters, but I think most are ignored. The RSDA.com organization also does advocacy work on behalf of RSD/CRPS patients. But “POPS” is right. Until we get the paid lobbyists out of Washington whon, can donate the big bucks, we have legislators who don’t HAVE to “pay” their party so much per month, and we give each candidate a limited amount of money to use for their campaign (so that anyone can run for President, not just millionaires), I’m afraid money will rule. It should absolutely not be this way, and we shouldn’t have to fight so hard just for medication. Our doctors know what we need–not politicians. As long as heroin is cheap, there will be addicts. But they did not start by being prescribed opiates for conditions that we know have no cure and have serious, lifelong pain as the main symptom. If chronic pain patients are denied the medication they vitally need, more will turn to heroin and/or there will be more suicides.

Pops.
Real. Some of us our physically and emotionally effected by the disease more than others. I’m an x football guy and this full body CRPS has rendered me futile. I used to b THE lion. Now we rely only those like u with the intellect to articulate our case. PS. This is the first day n over 4 mo I’ve cracked open ‘function’. God Speed to u. Go @ go hard. I’m right behind u ass I’m n therapy like a banshee to launch.

I appreciate what has been said here but now I’m going to put my 2 cents in.
The problem with the lobbyists in Washington DC is that the ones who are not paid, or those who are not funded by organizations with lots of money are not the ones being heard by elected officials. It’s hard to fight the money from industry like big pharma, health insurance and addiction recovery with nothing but charity and good intentions. National politics has now come to the point of the people’s best interest falls way behind the interests of the donors who support the campaign funds of the elected officials in office. During the presidential campaign there was a lot of talk about “PAY FOR PLAY”. This is the exact problem in politics today.
Officials who may have started with good intentions are now caught up in the fund raising of their political party’s.
These senators and congressmen are actually required by their political party to make calls and ask for donations/campaign contributions, and because they are not allowed to fund raise or solicit funds from their offices in the capital, the National party’s setup call centers where these officials go to make their calls. Now, these elected officials aren’t going to call the ordinary American to donate 5 or 10 dollars. They are going to call owners of big business who donate hundreds of thousands because their national party requires them to earn a certain amount of money every week. So now we come to the pay for play part. It’s extremely obvious that these senators and congressmen have to make promises to these leaders of big business inorder to get donations because if it wasn’t, everything we say to these elected officials would count. A lot of these elected officials have expressed their dismay with this process because many of them are spending up to 30 hours a week begging for money and not spending as much time doing the job for which they were elected to do.
Next, I have personally written over 250 letters and emails to my representatives from my state and have made countless phone calls. So far the only response or correspondence that I have recieved came from David Vitter that was a computer generated smoke up the ass blowing email stating that my concerns are very important and that he would take my words into consideration if it comes to a vote. The others never answered at all but I still write weekly.
So here’s the thing.
All lobbyists who work for a For Profit industry should not be allowed in the nation’s capital to conduct business.
Political party’s need to stop requiring our elected officials to fund raise for the party because this practice promotes corruption and bias for those who donate.
Finally, all elected officials should be required to personally answer all of their constituents questions and concerns instead of staffers doing all the corresponding.
Here it is in nutshell. Our country is divided for some very stupid reasons right now. Racism and other forms of discrimination has reared it’s ugly head in this country again and it’s elected officials who are promoting it, and one individual is actually encouraging it. For this reason I can’t blame chronic pain sufferers for being pissed off because people who are addicted are getting the attention right now. I can’t blame them for hateful remarks towards those addicted because that’s what the example has been for the past 19 months in federal government and politics.
But what I can do is blame the chronic pain community for their lack of involvement. I get so tired of all the “POOR ME” people in the pain community who sit on their Facebook pages complaining all day and every day about how the world is set against them. Then when you ask them to write letters or get involved in one way or another, they simply say, “BUT I HURT TO BAD TO DO ANYTHING”. Of course their Facebook comments are constant and the games they play online get the needed attention, but they hurt too bad to do anything else.
So I agree, the chronic pain community has to stop being so judgemental, hateful and full of self pity and get off their collective a**es and start making their elected officials listen to them. These bureaucrats won’t hear us unless we start yelling at them.

I agree with Dr. Nagel about the importance of political self advocacy in pain care and, of course, the great challenges in this regard.
We live in a pluralistic society with great differences in needs, beliefs, values, and practices. Government and professional organizations try to simplify things in pain care to the detriment of individuals suffering pain. This is one of the fatal flaws in our pain care system that has lead to poor pain care for too many people in pain. And so the cure for this is for individuals to effectively express their pain care needs to government and the health care industry.
Yours truly was successful in convincing NIH IPRCC that cures are possible for some in pain and that curative care should be part of the National Pain Strategy. And so, it is possible for individuals to make a difference at the National level when it comes to pain care.
There are a great many issues unresolved in pain care today- costs are high, treatments too often lack effectiveness and or care is difficult to access. The folks in government have been slow to address these issues and it is clear there is an entrenched old boy network in pain care that limits choices for people in pain. In addition, they have developed a system where the voice of people in pain is either excluded or minimized and the voice of a few experts are conflated as being sufficient for the needs of the many in pain.
Many people in pain now understand the importance of speaking up about pain care. And many are still overconformed to our pain care system and have yet to develop a better vision and a better plan to address the needs of people in pain. I would remind people in pain that a year ago the former Assistant Secretary of Health called the National Pain Strategy just ” a beginning”-and I have to say now that lowering the prevalence of pain and curative treatment is part of the plan – I have to agree. Dr. Novotny is now the new person in charge of pain care at the Federal level-and he made it clear that he is not an expert in pain care( go figure). So a great deal more needs to be done by the public and individuals in pain to get our pain care system on track. So along with Dr. Nagel I encourage people in pain to petition both government and the health care industry to improve pain care to meet the needs of all in pain.

Dr Nagel thank you! Thank you for serving the pain community and embarking on an adventure in political advocacy. The pain issue has so greatly impacted my family, myself living in chronic pain, my family mostly practicing physicians having to deal with the unintented consequences of the governments “war” on opioids it’s comforting to know we have knowledgable experienced advocates on the side of reason. Education is 90% of the battle in my opinion. So many in politics in the media have no idea what they’re talking about but don’t let that deter them from making policy or swaying public opinion. Thank you for educating and advocating this pain issue needs more facts and less rhetoric!